tbuckley/cabot-search huggingface dataset:
Adaptation of remote symptom monitoring using electronic patient-reported outcomes for implementation in real-world settings.
Authors: D'Ambra Dent, Stacey A. Ingram, Nicole E. Caston, Haley Thigpen, Fallon Lalor, Omer Jamy, Smith Giri, Andres Azuero, Jennifer Young Pierce, Chelsea L. McGowen, Casey L. Daniel, Courtney J. Andrews, Chao-Hui Huang, James Nicholas Dionne-Odom, Bryan J Weiner, Doris Howell, Bradford E. Jackson, Angela M. Stover, Gabrielle Betty Rocque
Journal: Journal of Clinical Oncology (2022)

272 Background: Despite evidence of clinical benefits, widespread implementation of remote symptom monitoring has been limited. We describe a process of adapting a remote symptom monitoring intervention developed in a research setting to a real-world clinical setting at two cancer centers. Methods: This formative evaluation assessed core components and adaptations to improve acceptability and fit of remote symptom monitoring using Stirman’s Framework for Modifications and Adaptations. Implementation outcomes were evaluated in pilot studies at the two cancer centers testing technology (Phase I) and workflow (Phase II and III) using electronic health data; qualitative evaluation with semi-structured interviews of clinical team members; and capture of field notes from clinical teams and administrators regarding barriers and recommended adaptations for future implementation. Results: Core components of remote symptom monitoring included electronic delivery of surveys with actionable symptoms, patient education on the intervention, a system to monitor survey compliance in real-time, the capacity to generate alerts, training nurses to manage alerts, and identification of personnel responsible for managing symptoms. In the pilot studies, while most patients completed &gt; 50% of expected surveys, adaptations were identified to address barriers related to workflow challenges, patient and clinician access to technology, digital health literacy, survey fatigue, alert fatigue, and data visibility. Conclusions: Using an implementation science approach, we facilitated adaptation of remote symptom monitoring interventions from the research setting to clinical practice and identified key areas to promote effective uptake and sustainability.
Association of community cancer centers key quality care recommendations for stage IB to IIIA non–small cell lung cancer.
Authors: Matthew Smeltzer, Brendon Matthew Stiles, Percy Lee, Joseph Kim, Ashley Lile, Sandra Megally, Leigh Boehmer
Journal: Journal of Clinical Oncology (2022)

30 Background: Early-stage diagnosis of non-small cell lung cancer (NSCLC) provides patients the best opportunity for long-term survival. There are documented deficiencies, however, in the quality of care many receive. Optimal care for persons with early-stage NSCLC requires a well-coordinated, multifaceted approach. The Association of Community Cancer Centers (ACCC) assembled a group of experts to create a quality document to guide care for persons with early-stage NSCLC. Methods: We convened an expert panel of lung cancer specialists with expertise in medical oncology, thoracic surgery, radiation oncology, oncology nursing, and epidemiology. The panel developed a document with 30 key quality recommendations for care of persons with stage IB to IIIA NSCLC. Evidence-based recommendations were incorporated from American Society of Clinical Oncology, International Association for the Study of Lung Cancer, American Society for Radiation Oncology, Commission on Cancer, and National Comprehensive Cancer Network guidelines and recommendations. A consensus decision-making model was utilized and recommendations were compiled in tabular format. Results: The key areas identified by the committee were: Care Coordination and Patient Education, Diagnosis and Biomarker Testing, Staging and Treatment Planning, and Post-Treatment Survivorship Care. Highlights of Care Coordination and Patient Education included shared decision-making, access to a care navigator, psychosocial support and patient education on NSCLC management, clinical trials, smoking cessation and tobacco dependence interventions, and community resources. Diagnosis and Biomarker Testing recommendations include multidisciplinary evaluation and care coordination, biomarker testing (eg, EGFR) in patients with stage IB to IIIA NSCLC who may be eligible for targeted therapy, PD-L1 testing in patients with resected stage II to IIIA NSCLC, and discussing post-resection targeted therapy. Staging and Treatment Planning recommendations include invasive staging, multimodality staging as appropriate, multidisciplinary treatment planning, and post-resection initiation of adjuvant therapy within 60 days when given. Recommendations for Post-Treatment Survivorship Care include implementation of standard surveillance, survivorship care plans, access to palliative care services, and sustained assessment of distress and referral to psychosocial support services. Conclusions: Well-coordinated, evidence-based care delivery is paramount to achieving the best outcome for individuals with early-stage NSCLC. The ACCC quality care document is an expert designed tool, combining evidence-based recommendations from multiple sources, to help achieve this goal.
Social determinants of health—to screen or not to screen? How, when, and what to do next are really the questions.
Authors: Rebekah SM Angove, Kathleen D. Gallagher
Journal: Journal of Clinical Oncology (2022)

169 Background: Social determinants of health (SDOH) have a considerable impact on the health outcomes of chronically ill patients. Although the implementation of social needs screening in clinical settings has been studied, patient perspectives of discussing SDOH with health care providers has not been thoroughly investigated. This study sought to explore the experience and perspectives of limited-resource patients with cancer regarding SDOH discussions. Methods: This cross-sectional analysis used data from a nationwide survey distributed in May 2022 by Patient Advocate Foundation (PAF). The survey was fielded via email to patients who received PAF services in 2020. Inclusion criteria included a valid email, aged &gt;19 and a current or previous cancer treatment. Frequencies and percentages were calculated for categorical variables. Questions focused on individual experiences with SDOH screening, conversations and expectation around information use and assistance. Results: A total of 481 survey respondents with cancer completed the survey. Most respondents were female (73%), aged 56-75 (52%), household income &lt; $48,000 (66%), and insured (98%); 38% were Black, Indigenous or Persons of Color (BIPOC). The most common cancer types were hematologic (42%) and breast (34%); 30% were diagnosed &lt; 2 years prior and 82% received treatment in past 6 months. One quarter (26%) stopped or delayed care in past 12 months due to cost and 66% reported that social needs interfered with treatment in past 12 months. Two-thirds (64%) reported conversations about social needs in the past 12 months. Transportation (36%), food insecurity (32%) and personal safety were the most cited nonmedical needs. Conversations were most often initiated by nurse/PA (30%), social worker (30%) or doctor (29%) and patients reported being ‘extremely comfortable’ being asked these questions by the same providers; doctor (54%), nurse/PA (48%), social worker (46%). Over half (53%) reported comfort with SDOH information being part of their medical record; 61% wanted to be asked SDOH questions face-to-face. If a social need was identified, patients trusted patient advocacy groups (64%), social worker (61%) and charitable non-profit organizations (49%) to help them locate assistance. Only 21% indicated knowledge of availability of needs navigation services. Conclusions: Although patients are open to sharing social issues with providers, our data suggests that conversations may not be routinely initiated in clinical settings. There is also a need to increase awareness of resources in response to SDOH screening. Challenges in trust and privacy persist when disclosing this information. Achieving health equity requires culturally responsive strategies to embed screening and referrals into workflow to ensure cancer patients’ needs are identified and they are linked to appropriate nonmedical resources and services.
A randomized controlled trial of routine financial toxicity screening via electronic patient-reported outcomes (AFT-39).
Authors: Victoria Susana Blinder, Allison Mary Deal, Brenda F. Ginos, Jennifer Jansen, Amylou C. Dueck, Gina L. Mazza, Sydney Henson, Philip M Carr, Lauren J. Rogak, Anna Weiss, Anna Rapperport, Patricia Spears, Francesca Gany, Deborah Schrag, Ethan Basch
Journal: Journal of Clinical Oncology (2022)

180 Background: Financial toxicity affects 20% of cancer survivors and is associated with decreased treatment adherence and poor clinical outcomes. No large-scale programs have been implemented to mitigate financial toxicity among patients undergoing cancer treatment. We evaluated the effect of monthly patient-reported financial toxicity screening as part of a larger digital monitoring intervention. Methods: PRO-TECT (AFT-39) is a cluster-randomized trial of patients undergoing systemic therapy for metastatic cancer. Practices were randomized 1:1 to digital symptom monitoring with patient-reported outcomes (“PRO practices”) or usual care (“control practices”). Digital monitoring consisted of between-visit online or automated telephone patient surveys containing symptom, functioning, and financial toxicity screening questions for up to one year, with automated alerts sent to practice nurses for concerning survey scores. Clinical team actions in response to alerts were not mandated. The primary outcome of this analysis was development or worsening of financial difficulties, assessed via the EORTC QLQ-C30 (“Has your physical condition or medical treatment caused you financial difficulties?”), at any time compared to baseline. A randomly selected subset of patients and nurses were interviewed about their experiences with the intervention. Results: 1,191 patients were enrolled (593 PRO; 598 control) at 52 US community oncology practices. Overall, 30.2% of patients treated at practices that received the intervention developed, or experienced worsening of, financial difficulties, compared to 39.0% of patients treated at control practices (p = 0.01). Patients and nurses interviewed stated that financial toxicity screening identified patients for financial counseling who otherwise would be reluctant to seek, or unaware of the availability of, assistance. Conclusions: Screening for financial toxicity as part of routine digital patient monitoring with PROs reduces the development, or worsening, of financial difficulties among patients undergoing systemic cancer therapy. Clinical trial information: NCT03249090.
VOCAL (Views of Ovarian Cancer patients-how maintenance therapy Affects their Lives) study: A lens into the financial and quality of life (QoL) impact of disease burden and ethnic disparities reported directly by the patient.
Authors: Dana Meredith Chase, Soham Shukla, Joanna de Courcy, Hilary Ellis, James Piercy, Teresa Taylor-Whiteley, Amanda Golembesky, Stephanie L. Wethington
Journal: Journal of Clinical Oncology (2022)

274 Background: Limited real-world (RW) financial burden and QoL data exist for patients (pts) with advanced ovarian cancer (aOC). Differences in QoL have yet to be explored based on ethnicity. Methods: This cross-sectional online survey included US aOC pts who completed first line (1L) treatment, were ≥18 years, and eligible for 1L maintenance (1Lm). Financial burden was measured by employment status, health insurance coverage, household income, and expenses. QoL was measured by 2 validated patient-reported outcome (PRO) measures: EQ-5D-3L (mobility, self care, activities, pain/discomfort, and anxiety/depression; reported as no, some, or extreme problems) and EORTC QLQ-C30 (functional and symptomatic items). Results: 152 pts from 27 states were surveyed. The most common ethnicities were White (W; 104 [68%]), Black/African American (B/AA; 19 [12%]), Hispanic and Latino (H/L; 11 [7%]). 76 (50%) were not working (unemployed, retired, on disability, or long-term sick leave); 45 of these did not work due to aOC (W: 27/104 [26%], B/AA: 10/19 [53%], H/L: 4/11 [36%]). W pts spent the most on medical costs (mean [SD]: $396.60 [SD: 996.10]) and tests/labs ($133.50 [483.89]). Active surveillance was the most common aOC treatment (39% [W: 41%; B/AA: 32%, H/L: 36%]). Over a quarter of W (27%) and H/L (27%) pts, and nearly half of B/AA (48%) pts were receiving IV 1Lm for aOC. Fewer H/L and B/AA pts were offered genetic testing compared with W pts (27% and 58% vs 83%, respectively). On EQ-5D-3L dimensions, a higher proportion of W pts reported no problem with walking (W: 72%, B/AA: 53%, H/L: 55%), self care (W: 94%, B/AA: 79%, H/L: 64%), usual activities (W: 53%, B/AA: 26%, H/L: 27%), and no pain/discomfort (W: 52%, B/AA: 32%; H/L: 36%). B/AA pts reported the lowest current health status score (mean [SD] EQ-5D VAS score: 53.5 [18.46]). 19% of pts reported extreme anxiety/depression, the highest proportion was seen for H/L (5; 45%) followed by B/AA (7; 37%) and W (10; 10%) pts. Of the EORTC-QLQ-C30 functioning items (100 = highest functioning), the highest impact was seen on emotional functioning (mean [SD]: 59.8 [26.56]; W: 65.5 [23.83], B/AA: 48.2 [28.13], H/L: 53.0 [29.17]). Of the symptom items (100 = highest impact), the highest score was seen for insomnia (mean [SD] 39.5 [30.79]; W: 39.4 [28.54], B/AA: 35.1 [30.38], H/L: 48.5 [45.62]) and fatigue (mean [SD] 36.1 [26.89]; W: 34.4 [26.34], B/AA: 46.2 [29.22], H/L: 33.3 [32.96]). Conclusions: This novel assessment of RW financial burden and PROs by ethnicity signals important health disparities for B/AA and H/L vs W pts, highlighting a need to improve quality of care and support for pts of these ethnicities.
Variation in patient demographics across different modalities of tele-oncology.
Authors: Thomas David Rodgers, Zachary Burningham, Ahmad Sami Halwani, Michael J. Kelley, Vida Almario Passero
Journal: Journal of Clinical Oncology (2022)

394 Background: TeleOncology encompasses the delivery of care virtually though modalities such as electronic consultation (e-consult), telephone and video visits. The National TeleOncology (NTO) program was created by Veterans Affairs (VA) to address growing disparities in care across the VA network. Through NTO, subspecialty hematologists/oncologists can provide recommendations and care for patients located at VA centers across the county. We aimed to investigate differences in patient utilization of available forms of TeleOncology. Methods: NTO was started in 2020 and offers virtual care to over 20 VA sites. Patient visits were catalogued across different forms of TeleOncology including telephone, e-consult (chart review only), VA Video Connect (VVC, synchronous video visit with patient at home), and Clinical Video Telehealth (CVT, synchronous video visit with patient at local VA). Total and unique patient encounters were analyzed based on patient age, gender, race, care assessment need (CAN) score (predictor for identifying patients at high-risk for poor outcomes), and patient rurality. Modalities of telehealth were then compared. Results: 3008 unique patients and 5921 encounters were recorded (October 2019-May 2022). The majority of patients accessed care by CVT visit (n = 1915). Patient characteristics were statistically different between the modes of TeleOncology. Patients participating in CVT were older (Mean 70.5 (95% CI 69.97-70.97) vs 65.5 years old (95% CI 64.62-66.68) and had higher CAN scores (mean score 82 (95% CI 80.96-82.74) vs 69 (95% CI 66.76-70.74)), compared to patients assessed through e-consult. Conversely black and female patients were overrepresented in the e-consult group compared to the CVT group (Table). Patients receiving care by telephone were more often located in a rural or highly rural region compared to those seen through VVC (71.5% vs 52%). Conclusions: The NTO program offers unique insights into utilization patterns of different forms of virtual care. Patient characteristics were not similar across the e-consult, telephone, and video visit groups. Importantly racial and gender disparities were noted, with African American and female patients, being disproportionately cared for through chart review only compared to a video visit. These results represent a first step in understanding how patients’ interface with virtual care modalities. Future studies could investigate how patient and system factors might influence observed patterns.[Table: see text]
The Colorectal Cancer Alliance: Reshaping volunteerism during COVID-19.
Authors: Kim Newcomer, Ali Miller, Negeen Fathi, Abdullah Shoeb
Journal: Journal of Clinical Oncology (2022)

282 Background: Nonprofits across the United States have been severely limited during the ongoing coronavirus disease pandemic and have seen big drops in volunteer engagement. According to one survey, two-thirds of volunteers decreased or stopped contributing their time altogether due to the pandemic leaving a major gap in available support for nonprofits at a time when demand for many of their services has risen substantially. The Colorectal Cancer Alliance sought to adapt to the “new normal” of socially distanced operations by restructuring existing programs and encouraging our community to volunteer in virtual capacities during this time of social distancing. Methods: Each year, staff members at the Alliance collect data on volunteer roles, hours, and participants. Using this data, we are able to analyze and compare the number of volunteers, volunteer hours, and engagement rates for each role Data collected and reported for 2021 was compared to previous years to assess the impact of the COVID-19 pandemic on volunteer hours at the Alliance. Results: The Colorectal Cancer Alliance’s established volunteer programs were promptly reshaped at the beginning of the COVID-19 pandemic. Leveraging existing fluency in remote volunteer roles, the Colorectal Cancer Alliance provided more peer-to-peer support both virtually and remotely during this time of social distancing. The total reported number of volunteer hours for 2021 was 85,100.5 hours, which is a nearly 300% increase from 2020 (29,391.5 hours), nearly 400% increase from 2019 (22,141.5 hours), and over 500% increase from 2018 (16,582 hours). The highest number of volunteer hours was seen in our DIY (peer-to-peer fundraising) program at 34,681 hours, followed by our Team Captains Walk at 16,200 hours, and in online peer-to-peer support groups Ally-to-Ally and Blue Hope Nation (BHN) at 9,083 hours. Compared to the previous year, DIY increased by over 350% (10,646 hours) and Ally-to-Ally and BHN increased by over 1200% (867 hours). It is interesting to note that peer-to-peer mechanics drove the largest increases during the isolating COVID years. Conclusions: Our results indicate the Colorectal Cancer Alliance was able to maintain full functionality and discover new and creative ways to not only keep volunteers engaged, but to also increase volunteer impact during the pandemic. The spike seen in peer-to-peer support efforts and activities helped contribute to increased psychosocial support for our volunteers and constituents. These positive outcomes from virtual volunteerism encourage us to continue to engage our volunteers in a virtual capacity going forward to broaden the scope of our impact during this time of social distancing. As COVID-19 restrictions are lifted, the Alliance plans to maintain the virtual and remote programs in place and to continue encouraging our allies to volunteer in any capacity they can.
Social vulnerability and cancer-related mortality among U.S. counties, 2013 to 2019.
Authors: S. M. Qasim Hussaini, Krista Y. Chen, Amanda L. Blackford, Harrison Quick, Ramy Sedhom, Arjun Gupta, Dan Laheru
Journal: Journal of Clinical Oncology (2022)

162 Background: Substantial differences exist among US counties with regards to cancer-related mortality. Social determinants of health (SDOH) can predispose underserved communities to poor cancer outcomes. We investigated the impact of county-level social vulnerability on age-adjusted cancer mortality rates (AAMRs). Methods: We linked cancer-related deaths across US counties from 2013 to 2019 in the CDC WONDER database to county-level Social Vulnerability Index (SVI) data from the CDC/ATSDR. Scores for overall SVI and its 4 subcomponents (socioeconomic status; household composition and disability; minority status and language; housing type and transportation) were calculated using 15 SDOH attributes. These were presented as percentile rankings by county and classified into quartiles based on their distribution among US counties (1st [least vulnerable] = 0 - 0.25; 4th [most vulnerable = 0.75 - 1.00]). AAMRs per 100,000 individuals across US counties were compared between 1 st and 4 th SVI quartiles using robust linear regression models with a log scale. Results: There were 4,107,273 deaths with overall AAMR 173 per 100,000 individuals. Highest AAMRs were noted among older adults &gt; 65 years, men, non-Hispanic Black, and rural counties. AAMRs increased proportionally when moving from least to most vulnerable counties. Counties in 4 th SVI quartile had 20% higher AAMRs compared to 1 st SVI quartile (rate ratio; RR 1.08, 95% CI [1.08, 1.09], p &lt; 0.001). This was pronounced for ages 45-65 (42% increase; RR 1.21, 95% CI [1.12 – 1.24]), Hispanic race (26% increase; RR 1.11, 95% CI [1.06, 1.16]), and rural counties (21% increase; RR 1.17, 95% CI [1.15, 1.19]). Increase in AAMR between 1 st and 4 th SVI quartile from vulnerable socioeconomic status was most pronounced in rural counties (RR 1.17; 95% CI [1.15, 1.2]), women (RR 1.17; 95% CI [1.15, 1.2]) and ages 45-65 (RR 1.15; 95% CI [1.09, 1.14]). Vulnerable household composition/disability was most pronounced for rural residents (RR 1.12; 95% CI [1.09, 1.14]), and housing/transportation barriers for Hispanic individuals (RR 1.15; 95% CI [1.09, 1.21]). Conclusions: This study highlights the most socially vulnerable US counties have higher cancer mortality rates than the least vulnerable US counties. Furthermore, non-Hispanic blacks, older adults, and rural counties face highest risks of health inequities. Our findings inform ongoing congressional deliberations on transportation, telehealth, and rural infrastructure to achieve geographic parity.[Table: see text]